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Knowledge is Power

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  • Writer's pictureLisa Perez

For parents of special needs students, advocacy is the name of the game

Updated: Sep 17, 2018

By Mathew Oakes

"It’s tireless work, I know. How to mitigate your kiddos’ weaknesses and leverage their strengths in an environment that wasn’t made for them? This isn’t in the manual."

An open letter to parents of students with disabilities in District 205:

We’re back in it again, friends. Let’s be honest, we were in most of the summer. Those extra phone calls, emails, meetings with principals, and appeal letters keep us tethered pretty closely to the school and district responsible for educating our special needs kids. With the new school year upon us, we once again roll up our sleeves (or push them up farther, I suppose, because we never really rolled them down) and go about the work of advocating for and ensuring our kids get everything they need for an equitable education.

It’s tireless work, I know. How to mitigate your kiddos’ weaknesses and leverage their strengths in an environment that wasn’t made for them? This isn’t in the manual.

One insight I’ve gained from the work of scholars in Disability Studies is this: It’s not the student who is disabled, not really. Or, at least, it’s not that the student is intrinsically disabled; no, that would suggest something about human nature that I simply cannot accept. We all, each of us, come to the world with strengths and weaknesses. It’s just that some of our weaknesses are designated within the range of normal while others are considered out of bounds, abnormal.

It’s this system that grew up around us and decide that one human experience is “able” and another “disabled” that we should see as abnormal. The system disables and so it’s this system that is broken, not your child.

So keep this tucked away for your next IEP meeting and let it fuel you until then: every accommodation, modification, or additional service you acquire for your learner is an admission that the educational environment our culture has built is flawed. While the process convinces itself that it’s your kiddo that is the deviation from the norm that needs accommodation, we know this simply isn’t true.

No, our kiddos are warriors who day in and day out demonstrate that no system we build has final say on what counts as acceptable, permissible, or normal human experience. As our kiddos, in all of their complexity, push through a system that didn’t take them into consideration when it was designed, they stake out more and more territory for the inclusion of all possible human experiences tomorrow.

And yet, they’re just kids. This shouldn’t be their responsibility. This shouldn’t be this hard. God knows, Common Core math is hard enough.

We do what needs to be done. We find allies within our schools and outside. We link arms with other parents and students fighting for equity (and to for white folks like me for whom disability is the first entry into the experiences of marginalization, please, reread and imagine this open letter applying to students of color, LGBTQIA+ learners, and our undocumented Dreamers). We press on.

We celebrate the small and chip away at the overwhelming. It’s what we do.

I’ll be thinking of you all tomorrow at bus stops and dropoff lines.

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